Of Dragons & Dystonia

Ever since I was a little girl, Sleeping Beauty has been my favorite Disney film. The princess is beautiful, the prince is charming, and in the time it takes them to waltz through a single song, they’ve fallen in “I-would-walk-through-a-wall-ofthorns-for-you!” love.

That’s not my favorite part.

I love the end of the film, when the prince on his noble steed gallops madly toward the castle, seemingly just moments from kissing his sleeping beauty. In a last-ditch effort to keep the lovebirds apart, the wicked fairy blocks the prince’s path by transforming into an immense black-and-purple dragon that breathes green (!) fire.

The prince charges, falls from his horse, runs forward and with his sword clouts the dragon on the snout. But the monster shakes it off. Our prince might as well have whacked the dragon with a letter opener.

That’s how I felt when working on the cover story for this 2011 Seating & Positioning Handbook. I’d heard the word dystonia in so many other clinical interviews with therapists and rehab technology suppliers that I thought it would be superb for this special section.

I was excited – sort of my waltz-in-the-woods stage – until I started talking to experts on dystonia. This neurologically based, involuntary-movement disorder is a dragon-sized topic that can present in so many different ways and with seemingly endless variations. And here I am, attacking it with a laptop.

This story cannot be the final word on dystonia. But I hope it serves as a good foundation for seating & mobility specialists. My humble thanks to the experts who fueled this month’s discussion by generously sharing their experiences and research.

In Sleeping Beauty, the prince defeats the dragon, of course, thanks to very timely magical intervention. Seating & mobility assessments aren’t fairy tales, but here’s hoping that understanding more about dystonia will lead to happier endings for clients and their families.